Genetics’ Effect On Cancer – And My Future

Not every cancer is random, or because of life choices. Some cancers, an estimated 5-10%, are due to genetics. This is generally referred to as inherited cancer, which means an inherited abnormal gene led to cancer. Unfortunately, it’s not always easy to tell without genetic testing whether or not you carry an abnormal gene, and genetic testing isn’t usually easily available unless you know your family has a history of some sort of cancer.

My mother’s side of the family apparently carries the abnormal gene that causes colon and rectal cancers, especially cancer that occurs at a younger age than most cases. We had no clue though, thanks to faulty information about how several relatives had died. After my mother’s diagnosis, we finally got the correct information, and discovered that her family has a history of early colon and rectal cancers. Hers was caught soon enough that it will not be fatal, but her tumor had been in the works for a very long time – since long before the age when doctors usually recommend getting colonoscopies. If we had known our family history, the doctors would have suggested she start them earlier than normal and perhaps this tumor would not have grown as it did. Odds are it still would have already been in the works, though, since it began so early.

This doesn’t have much of an impact on her, except for some understanding of how and why this happened. It does have an impact on my brother and I, however, especially since we now know some relatives had their first polyps removed as early as 35. That’s only 10 years away for me, less for my brother, and we’re starting to realize that in order to prevent this in ourselves, we may need to start colonoscopies as soon as now.

That thought is a little scary, and yet oddly liberating. There’s something in my genetics that could kill me, but there’s ways that I can prevent it from doing so. I feel equipped with the knowledge I’ve gained to be able to stop what’s happening to my mother from happening to me – I’ll possibly be able to avoid this happening at all. That likely means getting early and frequent colonoscopies, but doing so could mean living until I have great-grandchildren. That sort of knowledge is amazingly empowering; thanks to modern medicine, I can put that knowledge to use in order to have a long and healthy life.

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Guilt And Caregiving

caregiver guilt

Caregiver guilt.  There’s actually a weird amount of guilt that goes along with caregiving.

There’s the guilt of not always being there. Of having to work instead of go to doctor’s appointments. Of taking a vacation because it’s a holiday weekend. Of needing to clean your own apartment and get your own life sorted instead of helping someone with theirs. Of wanting to talk about things going on in your life with them, but feeling like you should just focus on their problems instead. Of going out and drinking with friends because I’m only 25 and my husband and I live downtown and there are patios and it’s summer…

I’ve had some weird, guilt too. Recently there was a day that I normally would have gone to my parents’ to take care of my mother for her second day of infusing, but she’d finally felt a bit too babysat and told me not to come. That whole day I felt lost and guilty; I’d rearranged my summer schedule to make sure I could be there, and then I wasn’t.

Was it awful to treat it like a “me day?” What if something happened while I wasn’t with her? Should I try to pick up a shift at work since I’ve hardly been working?

I felt so weird I ended up sitting on the sofa all day watching Netflix. I felt guilty for not caregiving and doing some relaxing instead.

Then, possibly my weirdest moment of guilt, I cut 11 inches of my hair off, but couldn’t easily donate it because of how it was cut, layered, and highlighted. I didn’t have enough hair for most places and wasn’t willing to cut enough off in order to have the right amount to donate. I’d offered my hair to my mother but with everything else going on she hasn’t really cared about hair loss – she got an adorable pixie cut so it won’t be as messy to lose but beyond that hasn’t thought too much of it. Not being able to donate eleven inches of hair made me feel like a monster. How selfish could I be to cut that much hair and not give it away while I have a mother going through chemo? Why wasn’t I thinking about other people’s needs?

I think we all try to be too perfect, too good, and too giving. We can’t spend our entire life living for someone else, we can’t possibly be there 24/7 for another person. Life doesn’t work that way. It’s okay to take time to yourself, which is exactly what my mother needed – I should have been able to pass the time that day without caregiving for her, I should have been able to do more than sit and watch TV. She needed time to herself, and knew that I was only a phone call away if she needed me. I should be able to do what I want with my hair without feeling like a monster – my mother didn’t want a wig from me, and if I didn’t have enough to donate, then okay. It’s not the end of the world. Knowing me, at some point in the future my hair will be at a point where I can cut 12 inches off and I’ll be sure that next time I can donate it. Problems solved, no caregiver guilt needed.

Caregiving as a young adult is already a stressful enough time without us adding misplaced feelings of caregiver guilt to ourselves as well. It’s perfectly okay to still do things for yourself, and in fact I’d encourage it. Maybe a weekend away, or a haircut, or a night out with friends is exactly what you need to come back to your caregiving life refreshed and ready to help.

Have you experienced caregiver guilt?  How do you cope with it?  Just like survivors, caregivers experience these complicated emotions too.  Share your story with us!

Love’s Not A Competition


I take Uber a lot. As anyone else who takes it a lot knows, it’s basically like being on a first date, except without dinner and you’re in a car (if you need a random laugh, watch this). Mom keeps worrying about me taking public transport to and from their house when I go to take care of her, so I’ve been taking Uber so she won’t stress.

This leads to me having a first date conversation with all of my new Uber drivers, which always ends up being about why I was out in the suburbs and why I’m heading back downtown. I’ve been telling them the brief truth, that I spent the day at my parents’ taking care of my mother who’s going through chemo. Every single time, the response is the same.

“You’re the best daughter ever!”

“You should win the best daughter award!”

“What, are you competing for best daughter? Wow that’s amazing!”

Guys, I’m not trying to “win” or compete with my brother, who’s in Alaska with his family. That’s not the point. But everyone keeps making sure I know how “awesome” and “amazing” what I’m doing is.

Okay, fine, I understand not everyone would be able or willing to do this for their parents. But I am, and my mom and I are really close, so this was a no brainer for me. Of course I was going to do whatever I could to help her. That doesn’t mean that every caregiver has to be praised so profusely for helping out. It’s actually kind of awkward, especially from strangers who then go into a story about so-and-so’s cancer when I really just want to put my headphones in and rest; I had a long day, just let me stop making small talk.


That could just be me though. I’m  not always great with compliments or praise. That’s actually a trait I  got from my mother. She’s the worst with being thanked for things, especially publicly. She helped me in college with a film project, and when we thanked her in the credits she got incredibly flustered, and made me promise not to thank her in any sort of discussion/speech at the film’s presentation.

I think my point is, the only people who need to be thanking me for my help are my mom and dad. If you want to help a caregiver out, instead of showering them with kudos, do something else to make their life easier. You don’t need to do a lot, but if you come across a caregiver, chances are they are going through a lot of stress and balancing acts with their life at the moment. Take them to coffee, lend them an ear, offer to help them shop for groceries or run errands or make dinner (note: these are suggestions for friends not random strangers). Even if they say no, they’ll probably appreciate that you even thought to offer to help them out with everyday things. You don’t need to heap praise on them – it will mean much more to them to have you think of their hectic life than to have someone pat them on the back for the hundredth time.

Luck and Medicine

I’m not sure I’d ever thought about just how much luck it takes to get a diagnosis for cancer. It wasn’t something I ever considered until my mother got sick. I always assumed that cancer must have a lot of ongoing symptoms, or sudden symptoms, that send a person to the doctor and they discover after a test or two that it’s cancer. I’d never seen someone close to me go through this, and so I had no idea just how much of a role luck plays in medicine.

My mother had been sick for several months, but with unrelated issues. She had an infection at the start of the year that turned into a bladder and kidney infection, but after that was treated she got pneumonia. Once that was cleared up, she began to get ill whenever she ate. She had to insist that the doctor see her. At her appointment, she told him she thought it was irritable bowel. He scheduled a colonoscopy, but seemed to think it was early diabetes or something completely unrelated.

Almost as soon as they began the colonoscopy, they discovered a tumor the size of a tennis ball. It was creating a blockage that if it hadn’t been caught soon, could have burst and killed her – how lucky is that? She hadn’t shown any of the typical symptoms for colorectal cancer, and so she hadn’t considered it a possibility, and neither had her doctor, but the tumor had been in the works for many years and had gone undetected. She was rushed through the process of tests and consultations so that they could schedule surgery as soon as possible. The whole process happened in about two weeks, and her surgeon made sure that he scheduled her before he left town and with enough time for her to recover some and make it to my wedding. During surgery, the surgeon discovered that the tumor was beginning to attach to her uterine wall, and he made the decision to do a full hysterectomy and appendectomy. But it could have been attaching to her bladder; before surgery they couldn’t tell from the CT scans exactly where it was or what it may be affecting. We’re all relieved that it was on organs more easily removed – again, how lucky is that?


She’s been sick since February, and it’s been rough on her. But honestly, I’ve never been more grateful that she came down with an illness. It created a snowball effect that finally led to the discovery of Stage 3b colorectal cancer. If she hadn’t gotten that infection, or pneumonia, I’m not sure what would have happened. If it had happened any later than it did, we may have discovered Stage 4 cancer, instead of cancer that was still treatable.

I always thought medicine was all skill, hard work, and dedication, combined with vigilance from the patient. I never realized just how big of a role luck plays in it as well. This whole process has been hard, but I think we’re all thanking our lucky stars that everything happened this way. It’s something I keep musing about, because I know it could have gone so much worse.

Have you experienced luck in your caregiving or cancer having experiences?

How I Discovered What Being An Advocate Really Means

being an advocate

Everyone kept telling me how wonderful it was that I was staying at the hospital with my mom, so that I could be sure to advocate for her. Every time someone said this, I felt a little bit more confused. What did I need to do? I’d never had to advocate for someone before. Was I doing it right? Was I totally dropping the ball? I made sure she had ice chips that first night. I stayed up another night when she was getting dehydrated, made sure the nurses were keeping track of her fluid loss, and got her a bolus IV when she needed one. I’d made her an awesome hospital care package. But was that enough? What was everyone talking about?

Her surgery was on a Monday, and the second day she was doing really well. My dad and I both stayed the first night she was in the hospital, and the next afternoon they both insisted I go home and rest, since I hadn’t really slept in 36 hours. I went home and slept for twelve hours that night before getting up, going to a hair trial for my wedding, and heading back to the hospital. She seemed fine the day before, so I took my time and did some things I needed to do.

When I arrived, my dad was sitting on the edge of my mom’s bed while she was crying and telling him about her day. I was terrified at this unexpected change.

My mother had been feeling so well that she sent my father home that morning to rest, assuming that she would be able to sleep until one of us got back. As anyone who has spent time in the hospital knows, the early morning is when the doctors, surgeons, and nurses all visit and try to get the patient up and about or run tests that they need. That morning, two days after her surgery, a new shift of nurses came on and decided that she needed to try to walk and sit up. They moved her to the recliner chair and left her there…for three hours by herself. Her catheter bag fell at one point, she was slipping in the chair and couldn’t push herself back upright (funny how you don’t notice your ab muscles in everything you do until you can’t use them) and she couldn’t reach her nurse call button because they had left it on the bed. Her phone battery was dying, she couldn’t call either one of us.

A nurse finally came in and got her back into bed, but she was beyond exhausted and distraught at how helpless she had found herself. Not long after my dad and I showed up, the same nurses decided they wanted to get her up and walking. They barely let her rest on the edge of the bed after sitting up, and she took two steps before fainting because she was so dizzy.

Needless to say, I was livid.

Fortunately, the nurse leader came in right after that to see how my mother’s care was going. She was basically the customer service representative of the floor. My father just seemed annoyed at one more person coming in to bother her, and just wanted the nurse leader to leave so Mom could rest. My mother was still so upset she was crying as she tried to talk about everything that had happened that day. That’s unlike her; anyone who has ever met her knows how strong and fierce she usually is. I was finally so angry, I did what neither of them could or would do.

I spoke up for my mother, I drew on that strength I’d always known her to possess, and I let that poor nurse leader have it. Politely but incredibly firmly, I let her know how horribly upset we all were at how her day had gone. I reminded her what should be in my mother’s chart; that she had been on a starvation diet for a month before her surgery and hadn’t entered the hospital at full strength, and was in fact malnourished and anemic, not to mention how much blood she had lost during surgery. I let her know how unacceptable it was to us that she had been left alone for so long without anyone checking on her, especially since she didn’t have her call button within reach the whole time. I forbid the nursing staff from moving her without one of us present, since in her weakened state she couldn’t help herself if she slipped out of the chair or dropped something. I let them know how they had pushed her too far, and that we wouldn’t allow it again.

I realized then what everyone had meant about advocacy. My mother was in a position where she couldn’t speak up for herself; she was doped up on an epidural, and unable to tell what her limits were. Patients always tend to assume that the doctors and nurses know exactly what’s best. But sometimes, they forget that every patient is an individual and they push a little too hard and rush someone past their personal limitations.

It’s in those moments that someone else needs to speak up, and ensure that the care being given is within the patient’s comfort zone. That’s what being an advocate really means.

What does being an advocate mean to you?

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Celebrating Joy In The Midst Of Cancer

celebrating joy

We had an insanely busy May as a family, and not everything that happened was bad. In fact, two events were life changing moments of pure joy.

Or at least they were meant to be.

My niece was born May 13th and my husband and I were married May 17th. My mother had surgery May 4th, though, and we were still struggling through that. It felt odd, the switch between hardship and joy throughout the month. One minute we were all constantly texting and calling, checking on each other and passing information back and forth about how my mother was recovering. The next, we were texting and calling about my sister-in-law and niece, getting pictures and shedding tears of happiness instead of sorrow (she has so much hair! she’s so precious! look at that face!). Immediately after, we were texting and sending pictures of our wedding weekend, of my husband’s commissioning, graduation, and our wedding ceremony.

jp0494(Gratuitous wedding photo share…)

It was a whirlwind of emotions. There were plenty of times when I felt guilty for feeling happy during my wedding weekend. It was a weird sort of guilt, the guilt of dragging my mother out of the house to go to the rehearsal, rehearsal dinner, and wedding when she should have been home resting. But there was also a deeper sort of joy, beyond getting married and being an aunt, a deeper kind that was purely the joy that mom was there to share it all with us, the joy that she had made it through and was going to get better.

Before her surgery was scheduled, we weren’t sure if she’d make it to the wedding or still be in the hospital. I petulantly told my husband that if she didn’t make it to the wedding, neither would I. I think I told him to “marry himself, then,” when he tried to tell me I was being ridiculous. I couldn’t imagine going through that day without her, couldn’t imagine walking down the aisle without seeing her in the front row. Her surgeon was amazing, though, and made sure she was rushed into surgery before my wedding, so that we knew she’d be released and able to attend. We were all so happy that weekend, especially after my niece’s birth only a few days before.

The guilt gradually went away, because honestly I think we all needed things to be happy about.

That’s just it. There shouldn’t be any guilt about joyous events. They were all so wonderful, and they were the boost we all needed as a family. My mother has been so happy, getting daily photos of her first grandchild, seeing the photos from our wedding, knowing that we all have things to look forward to. Joy is the only reason to keep going, and during cancer you need joy most of all. Celebrate joy, never let yourself feel guilty for being happy, even as you’re struggling. Especially when you’re struggling. That’s when joy matters the most.

A Different Kind of Self Care

self care

Through everything that’s happened this last month, the constant that I’ve heard from people is the need to take care of myself as well as my mother. I’ve been trying my best, but self care can be a broad, vague undertaking. What does self care mean? Is it as simple as making sure you eat and sleep? For me, my self care has consisted of binge watching Netflix when I’m physically drained, or cleaning my apartment, which is still a post-wedding disaster. Neither of those are helping me feel cared for, in fact my self care has mostly meant ignoring how I’ve been feeling through all of this.

That’s beginning to drain me.

I work really well in crisis. My mother broke her wrist a few years ago when we were in Ireland, and I didn’t lose my cool and got her help. I can go and go through stress, because it tends to make me work harder and be more focused. I have an inner strength I’ve discovered that I draw on in crisis, and I’ve been using it nonstop since we got her diagnosis April 13th.

It was that strength I had when sitting in the surgery waiting room for over six hours with my father, watching a board that only rarely updated itself on how her surgery was progressing. The strength I had when I was sitting awake and exhausted several nights in a row in the recliner beside her as she slept, because my dad and I couldn’t stand to leave her alone. The strength I had to advocate for her when the nurses were rushing her recovery, pushing her beyond her limits and she couldn’t speak up for herself. The strength I’ve had in giving up a job I loved so that my schedule was free to take care of her, while also planning my wedding from her hospital room as she was finally able to eat for the first time in weeks. The strength I had while watching her struggle to walk around my wedding two weeks later as everyone told me again and again, “Well she looks fine, so she must be recovered,” until I wanted to scream at them all.

That strength is finally beginning to wane.

Watching her struggle with what her life is going to be like for the next year, what she’s already had to go through in just barely over a month…

I’m spent. And I can’t be. I think the worst part is knowing that I can’t burn out now, I can’t give up, because she and my dad need me to continue to draw on that strength I amazed us all with during these last few weeks. But four weeks later, I feel like I’ve used all of it up.

I can’t watch her be in pain anymore. I can’t think about how I won’t be here through all of her treatments like I’d hoped, because I’m moving in October to Oklahoma with my husband. I can’t keep telling people that I’m okay, and that she’s doing great, because I’m not, and she’s not. No, the cancer is not going to kill her. No, it didn’t spread beyond what organs they removed in surgery. Yes, she will get through this and live to visit her first grandchild (born three weeks ago) and see my family grow (whenever we decide to start one).

But you know what? That doesn’t make any of this suck less. And lately, all I’ve needed was some self care. For me, at this moment, this means finally allowing myself to feel it, finally allowing myself to be spent and drained and depressed and overwhelmed and definitely completely not okay with any of this. For now, self care is allowing myself the freedom to give in to the impulse that’s been gripping me recently, the impulse to collapse right where I am and sob until my tears run dry.

And once I did that, I picked myself up, dried my cheeks, and felt a bit of strength return.

Self care is about more than making sure you eat and sleep enough while caring for someone else. It also means allowing yourself weak moments, so that you can continue having strong ones.

Welcome Julia!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Julia!

Julia is a writer, bartender, new Army Officer’s wife, new aunt, and a caregiver for her mother undergoing colorectal cancer treatments. Since the diagnosis in mid-April 2015, Julia began the juggling act of work, wedding planning, cooing over baby pictures, and taking care of her mother through major surgery and now chemo. As someone who writes through stress, Julia is hoping to provide a different perspective for Lacuna Loft as a young adult caregiver taking care of a parent with cancer.